On January 14th, 2019, a Clinical Patient Management System meeting is took place at the University Medical Center Groningen (UMCG) in Groningen, The Netherlands.
First webinar on transition from childhood to adulthood, a MetabERN/SSIEM collaboration. 25 April 2019 at 2:30 CET.
To improve the realisation of clinical trials within the network, and adequately adapt the protocols to patients' expectations, MetabERN wishes to understand your perception of clinical trials.
Today, the first EU patients can use ePrescriptions issued by their home doctor when visiting a pharmacy in another EU country.
Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point Rare Disease Day in their life.
Call for collaboration on ultra-rare disorders of sulfur metabolism
On 7th December the European Medicines Agency hosted the 16th joint meeting with the European network for Health Technology Assessment (EUnetHTA). EMA and EUnetHTA have been holding regular dialogues since 2010 and they are an opportunity to progress the EMA/EUnetHTA work plan.
The European Reference Networks are featured in the Commission's EUProtects campaign which aims to raise awareness of the ways in which the EU combats global challenges to protect its citizens.
The European Commission (DG SANTE) has commissioned a study to support the evaluation of the EU Orphan Regulation. This study focuses on the relevance, efficiency, effectiveness, coherence and EU added value of the regulation.
This Policy Roundtable, organised by the European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (ESPKU), was hosted by MEPs Deirdre Clune (Ireland, EPP) and Nessa Childers (Ireland, S&D).